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Parents in lawsuit over Thoughtful House treatement

14 Nov

Father takes ex-wife to court over son’s autism treatment is the title of a recent story on Statesman.com. The subtitle: Mother says intravenous treatment at Thoughtful House is unproven and too dangerous..

Yes, it’s about chelation. The kid has been undergoing chelation (suppository), but the father wants to do IV chelation. From the Statesman:

Mario Martinez wants his wife’s consent to let their 7-year-old son, William, undergo intravenous chelation — the use of chemicals to remove metals, such as lead and mercury, from the body. Martinez, 39, said he thinks his son is making steady progress at the Thoughtful House Center for Children in Austin by undergoing a less invasive form of chelation and wants the boy to start IV chelation.

The parents are divorced, with the father having primary care of the child. However, Thoughtful House requires both parents to consent to IV chelation.

The mother states that the suppository chelation has been ongoing for two years (yes, years) without progress, but with adverse side effects:

Juli Martinez said in an interview that her son has been receiving chelation in suppository form for two years, which she claims has made him ill. She said chelation hasn’t helped his autism but being in a regular classroom has.

The father has taken the mother to court to get the approval for the IV chelation.

Chelation is the process of removing metals from the body through drugs. Alternative medical practitioners (such as Thoughftul House) use chelation on the assumption that “heavy metal toxicity” is a factor in autism.

It isn’t. This is based on an incredibly bad hyptohesis (Autism is a “novel” form of mercury poisoning), and idea that actual medical toxicologists reject.

Chelation therapy for real heavy metal toxicity is not a prolonged process. Two years is very long. Chelation by suppository is a relatively inexpensive therapy. By contrast, IV chelation at thoughtful house involves $400 every two weeks in testing:

While there may not be scientific proof that chelation helps autism, anecdotal evidence exists, Mario Martinez said. He is willing to spend an extra $400 every two weeks on tests to make sure the twice-monthly IVs are safe, he said.

The father says that the IV chelation is great:

Mario Martinez, who has had primary custody of the couple’s two children since their 2007 divorce, disputes that chelation has made William ill and said that the boy had an IV chelation test that showed he easily tolerated it. He said it brought “immediate, dramatic results,” in which his learning and behavior improved.

I wonder what an “IV Chelation test” is? Did they do a round of IV chelation, without the mother’s consent? What about their rules that the mother has to approve?

Frankly, the mother should be the one taking the father to court.

The court proceeding has been put off until Dr. Jepson of Thoughful House can appear or give a deposition.

The mother is representing herself. Frankly, a medical toxicologist should step in to offer her some support to end this travesty.

Another example of irresponsible blogging by David Kirby

14 Nov

Autism Speaks recently put out what I consider to be a rather irresponsible press release. The Interagency Autism Coordinating Committee (IACC) added a new objective, and Autism Speaks chose to frame it as “IACC includes vaccine research objective in strategic plan for autism research“. I’ve discussed that already, so I won’t go into more details here.

Instead, I want to take a look at how David Kirby treated this story. He blogged this as Top Federal Panel Endorses Autism Research That Includes Vaccines – Dueling Press Releases Ensue. Mr. Kirby takes on the role of (misinformed) cheerleader for the vaccine-epidemic groups that sponsor the Age of Autism blog, where the piece was posted. As you will see, he probably should have checked with his community before posting.

On Tuesday, the Interagency Autism Coordinating Committee (IACC), Washington’s leading arbiter for directing federal funds to autism research, unanimously voted to recommend studies that include investigations into possible links between autism and environmental triggers – including vaccines – in certain subsets of children.

Mr. Kirby is invited to check the actual process of federal funding of autism research and the role of the IACC. He could watch the latest video of an IACC meeting, where Dr. Insel (director of NIMH and chair of the IACC) makes it clear that the IACC is an advisory and planning committee only. They are far from the “final arbiter for directing federal funds”. That is a minor point compared to the fact that the IACC did not recommend studies into the possible links between autism and vaccines.

This fact that the IACC was not committing to vaccine-autism research was not missed by some of his readers, who are quoted in the conclusion of his recent blog post. A conclusion which is rather confused in tone:

So, just to recap: The Federal Government’s top autism panel has voted unanimously to support studies into autism and its possible environmental triggers – including vaccination. In turn, Autism Speaks has cheered “including vaccine research objectives in the IACC plan” while its supposed rival, ASF, has equally cheered that “vaccine research (is) out of the IACC autism plan.”

Some parents I spoke with grudglingly accepted ASF’s view of events, however. “IACC took out ALL proposed vaccine research studies; They specifically elimated A) a vax unvax study, B) an unvaxed or partially vaxed sibs study and C) an adjuvant study – all gone,” one mother wrote. “They only left the word “vaccine” in a along laundry list of POTENTIAL future possible (translation never) study topics.”

Whether the IACC has recommended specific vaccine-autism research, or environment-autism research, vaccines remain on the list of possible contributors to autistic regression as far as the US Government is concerned.

And that is just how Congressional leaders intended it to be.

If parents are telling Mr. Kirby that the IACC is not really committing to fund vaccine research, how can this “just how Congressional leaders intended it to be”, since Mr. Kirby is asserting that the congressional intent is to include vaccine-autism research? It reads a bit confusing to me.

Well, it’s confusing because David Kirby has once again edited his post after the fact. Take a look at this screenshot of the original post:

kirby_backpedal

Yep, it’s different. Sometime after he posted his piece, he added the entire paragraph :

Some parents I spoke with grudglingly accepted ASF’s view of events, however. “IACC took out ALL proposed vaccine research studies; They specifically elimated A) a vax unvax study, B) an unvaxed or partially vaxed sibs study and C) an adjuvant study – all gone,” one mother wrote. “They only left the word “vaccine” in a along laundry list of POTENTIAL future possible (translation never) study topics.”

Yes, David Kirby wrote a post praising the IACC’s actions as funding vaccine research and then backpedaled when autism parents emailed him with the reality of the situation: the IACC did not commit to funding vaccine research.

He also edited out a comment where he refers to a statment by Alison Singer of the Autism Science Foundation as “And there was this, almost Orwellian statement: ”

I guess it was Orwellian until his own readers agreed with it?

Can you find where Mr. Kirby notes his change in that piece? Neither can I. A major change like this should be noted in the piece.

I’ll take a side-trip here into discussing Mr. Kirby’s mistakes and the way he handles them. Unfortunately, Mr. Kirby has a history of changing blog posts after the fact, even to the point of leaving clearly erroneous posts online without a comment.

A few examples:

He wrote a post, “CDC: Vaccine Study Design “Uninformative and Potentially Misleading“”. After Blogger (and epidemiologist) epiwonk showed the mistakes in that post, Mr Kirby rewrote the post, complete with a note about the error. In an odd move, he left first the erroneous post online. As epiwonk showed, even the second post was seriously flawed, but Mr. Kirby chose to leave it online.

Mr. Kirby made a serious misquote in his presentation to congressional staffers. No mention of the error was made in the power point slides he posted online.

He made a factor of 10 error in reading a graph for a blog post. He copied the blog post from the Age of Autism blog to the Huffington Post, and corrected the error in his Huffington Post piece without correcting the Age of Autism piece.

He made the rather simple error of mistaking the Obama transition teams Change.gov website for the change.gov website. Again, he posted to both the Age of Autism blog and to the Huffington Post. Mr. Kirby added a comment to the Huffington Post piece, but just deleted the erroneous post on the Age of Autism blog.

I make mistakes. Sometimes pretty spectacular mistakes. But I think it shows a certain level of disrespect from Mr. Kirby in how he handles his mistakes.

But, I’ve digressed from the main topic here: how Mr. Kirby handled the press releases from Autism Speaks and the Autism Science Foundation about the IACC’s new objective. Even without the confusing conclusion and the changes made after the fact, Mr. Kirby’s post is irresponsible.

It is one thing to take on the role of cheerleader/journalist as Mr. Kirby has done. But he gets to walk away from this community. He’s tried to walk away once, and he is now about to embark on a new career path taking on factory farming. In a few years when parents are complaining that the government hasn’t funded vaccine-autism research like David Kirby told us the government would…in a few years when the bitterness comes to the surface…where will David Kirby be? Will he be here to take responsibility for the mess he has created?

I admit, this is minor compared to the mess he made with convincing parents that autism was caused by thimerosal. How many children have been “treated” with chelation who wouldn’t have if Mr. Kirby hadn’t taken on this cause? How many of them regressed or were otherwise harmed? We will never know.

And he will never accept his role in this and his responsibility.

Flu vaccine ruins another life

12 Nov

Screw autism. Over in the US, yet another dangerous ailment was triggered by the dangerous, untested, unnecessary [insert blah blah here] flu vaccine….

Only two weeks after receiving his influenza vaccine, “Reuben” (not his real name), was struck with what he is convinced is an adverse event to the vaccine (also known as a “vaccine injury”) . Reuben began to notice the symptoms when it was painful to walk, noticed excess sweating, a foul smell coming off his skin, and saw his skin coming off in flakes. Numerous treatments with all sorts of home remedies were unable to help. Members of his family and friends began shunning him for his condition.

“I’m sure it was the flu shot,” Reuben said. “What else could it be? I didn’t take any medication, eat anything abnormal. In fact, the only thing I did different right before I got this was start a gym membership… You know… To be more healthy. I’d get up early, go work out, take a shower there and head to work. Life was good. And now this? I can’t even go to the gym because of this. Everyone stares at me as if I’m a leper.” Reuben took off his shoes to show his condition. The skin on his feet was flaking, oozing pus and blood. The odor was very foul. “I keep asking my doctor if he’s going to report it to the CDC,” Reuben says with frustration. “He says it wasn’t the flu shot. I just don’t believe him. Have you seen the crap they put in those things?” Reuben sighs, takes a breath, and says, “Maybe Jenny McCarthy will come help me like she helped that girl in Virginia?”

Athlete’s foot is a fungal infection of the skin of the feet. The fungus, Tinea pedis, thrives in warm, moist, dark environments. Feet that are covered up in shoes all day, without socks or other methods of absorbing feet sweat, are the perfect environment for T. pedis. In most cases, the condition resolves once the environmental conditions of the foot change through drying the shoes, wearing more absorbent socks, or applying foot powder. Over-the-counter and prescription medications are best to treat the condition fast and without side effects. In some people, such as those who are immune-compromised, the infection may spread beyond the feet. People should contact their health care provider if they notice that the infection has spread beyond the feet or does not get better after attempting to remedy the environment or applying medication.

Tinea pedis is acquired through contact with contaminated surfaces or sharing socks or shoes. Locker room and public shower floors are main sources of athlete’s foot infections since they are always moist, and many people with the condition may walk on them. To avoid acquiring athlete’s foot, keep your feet dry, use sandals or shoes on locker room or public shower floors, and use well-ventilated shoes. If you have certain conditions like heart disease or diabetes, pay special attention to any irritation of the feet or extremities as these may be a sign of poor circulation rather than an infection.

There have been no documented cases of athlete’s foot associated with the flu vaccine. What Reuben exhibits is a clear case of “recall bias”, where the correlation of the vaccine followed by an event like the foot infection is interpreted as being related. There is a principle in epidemiology and biostatistics which states that “correlation does not mean causation”.

Such a principle, however, is abandoned by certain groups where anything and everything that happens after an immunization is directly associated with the immunization no matter how biologically, statistically, or realistically impossible it is. If you feel that you have been harmed by a vaccine, please seek advice from your health care provider first and foremost. They have the training and knowledge that will never be replaced by celebrities, blogs, or any other anecdotal information.

H1N1 really does kill people

9 Nov

Its always a bit of a dilemma when writing an entry that doesn’t really touch on autism at all. But I have become convinced that the population beyond the autistic and autism community need to know that most of us within these communities do not support the know nothing anti-science, anti-medicine and most of all, anti-vaccine community that has a vocal minority place within our communities and that as such we owe it to our societies to vocally counter these idiots such as those at Age of Autism who spread lies and promote an age of ignorance.

I’ve heard it said by writers and readers of blogs like Age of Autism and sites like JABS that H1N1 is ‘no big deal’ and that the H1N1 vaccine is a dangerous and untested shot. Both of these things are untrue.

My partners youngest daughter (not autistic, although her eldest is) recently received an invitation to participate in the H1N1 vaccine testing which would involve three visits to the local hospital over a four week period. And over the 4 week period they would take two blood draws. This is for an ongoing safety and efficacy testing.

Swine flu is a big deal. In the UK there have been over 150 deaths since June 2009. Thats about 1 death per day.

In the US, the latest FluView weekly roundup notes 18 flu related child deaths of which 15 were due to H1N1. Fifteen in 7 days.

Next time someone says H1N1 is a ‘nothing’ issue, point them to these stats, behind which lie the dead bodies of real people.

Time Magazine picks up “I am Autism” protests

7 Nov

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks”

Age of Autism: misquotes Story Landis…jumps to unsupported conclusion

2 Nov

When the Age of Autism reported on a note written by Story Landis, they added a word that dramatically colored what was said. I am left wondering why would AoA make such an clearly detectable misquote? Read on and you will see what I mean.

Take a look at the piece titled “Dr. Story Landis: Autism not a multi-symptom disease but a money making scheme?“. That whole “money making scheme” part is what got people riled up. But is it really supported by what was said?

Here’s a little screenshot of the Age of Autism blog post, if you don’t want to click through to their site:

Segment of post about Story Landis

Segment of post about Story Landis

I know this seems redundant, but here is what they quote Dr. Landis as saying:

“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”

Emphasis added by me.

Why add emphasis, you might ask? Because “awards” is not in what Dr. Landis wrote in that first line. Go ahead and check. Here’s the note, as downloaded from the of the Age of Autism blog.

“I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

It is the second line that mentions awards:

Would be a good justification for looking at vaccine injured kids who have gotten awards.

The insertion isn’t a simple mistake–it is made twice in the same blog post. Here is the second place the mistake was made:

How could Landis imply that families are “trying to make” autism into a total body disease in order “to feed into vaccine injury awards.”

Neither section in the “quotes” is accurate. “Trying to make” isn’t in what Dr. Landis wrote, and, as we have just seen, “feed into vaccine injury awards” isn’t either.

Without the word “awards” added the meaning that the Age of Autism blog post tries to convey, heck, the title of the blog post–that Dr. Landis was speculating that this was a “money making scheme”–is unsupported.

Let’s dive into this a bit deeper. David Kirby, blogger at the Age of Autism and at the Huffington post did a very strange thing. In his piece he gets the correct quote from the note, doesn’t mention the mistake made at the age of autism, but still pushes the Age of Autism interpretation:

To many parents, it seemed that Dr. Landis suspected Redwood of “pushing” the study of these multisystem problems merely to boost the number of autism cases filed in vaccine court (the Vaccine Injury Compensation Program), and to increase their chances for victory. Judging by the comments on Age of Autism, those parents were profoundly offended by the implications of that interpretation.

I’m curious as to how Mr. Kirby came to the conclusion that Dr. Landis’ note was “merely to boost the number of autism cases filed in vaccine court” and “to increase their chances for victory”. Dr. Landis didn’t mention the court, the chances of victory…or even “awards” in the context that would support Mr. Kirby’s interpretation.

I’d be curious as to whether Mr. Kirby pointed out the mistakes to the Age of Autism blogger in question.

A casual observer might find it odd how Mr. Kirby corrected the quote and yet persisted in pushing (yes, I’ll use the term pushing) the interpretation based on the misquote. The same casual observer would find it especially odd, since Mr. Kirby was the one to publicly disclose Dr. Landis’ explanation of her comment:

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

“The other part of my note” being “Would be a good justification for looking at vaccine injured kids who have gotten awards.”

If you can look at the quote fresh, consider this interpretation–the first sentence, “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?” is discussing the if autism as a multisystem disorder would feed into the *idea* of autism as a vaccine injury. The assertion that her comment referred to vaccine injury “awards” is at best speculation and, at worst, a pretty clear misquote. I could speculate on the motives of the Age of Autism blogger, but haven’t we just seen how dangerous it is to speculate on motives with little information?

note: I made some small edits for clarity shortly after publishing this.

Amy Wallace discusses the responses she got to the WIRED article

28 Oct

A recent article in WIRED magazine took a close look at the vaccine/autism discussion. I discussed it briefly in a previous post. The article took a very science-oriented stance which, you can imagine, did not please the vaccines-cause-autism organizations.

For example, the “vaccines-cause-autism” organizations are listed by WIRED as “anti-vaccine” organizations.

The WIRED piece has caused a stir, even outside of the autism communities. Ms. Wallace’s piece has been noticed by Time Magazine, MinnPost.com, and The Atlantic. Oh, and some of the “anti-vaccine” orgs blogged about it too.

Not surprisingly the author of that piece, Ms. Amy Wallace, received a lot of responses to her article. In an interesting move, she has discussed many of the responses on Twitter. These have been compiled on the “bastard sheep” blog.

In addition to the WIRED article getting noticed, the responses are getting noticed. The Terra Sigillata blog has a piece up. The LA Times LA Observed has a piece on their blog.

Let’s take a closer look at the responses. She got about 250 so far, with about 3:1 in favor of the article. Some of the responses from her twitter feed: Some responses, like the one noted in Terra Sigillata, were quite harsh. Here are a couple:

I’ve been told I’ll think differently “if you live to grow up.” I’ve been warned that “this article will haunt you for a long time.”

“If she lives to grow up”? Pretty clear threat there.

She has every right to complain. Instead Ms. Wallace has reported on these comments, but for the most part she hasn’t added commentary. This hasn’t stopped her detractors from calling her a “cry baby”.

I’ve been called stupid, greedy, a whore, a prostitute, and a “fking lib.” I’ve been called the author of “heinous tripe.”

This is one view the outside world is getting of the autism communities. Does anyone think this is helping? OK, there are the small minority. So, to be more precise, does anyone reasonable disagree with the idea that this hurts the autism communities?

Here are some more comments she received that focus more on the autism communites:

In his book, Autism’s False Prophets, Dr. Offit writes about scientists who have been intimidated into staying silent about autism/vaccines. If scientists – who are armed with facts and trained to interpret them – are afraid, can it be any surprise that a lot of parents are, too?

No, it isn’t a surprise. Sad, yes. Surprise, no.

One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it, “Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.” Another mom wrote, “The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.” Another said, “I have a Son that needs Me – not another needle.”

To which Ms. Wallace responded rather well:

This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.

Ms. Wallace goes on to state:

The dominant emotion in even the angriest emails to me is despair. Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.

Which she follows with this comment from a parent:

“Those of us with autistic children are really sick of you know-it-alls,” one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far. “I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends. So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”

Ms. Wallace responds:

No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said — every available research dollar should be aimed at finding the causes of the disorder

Leaving aside the discussion of whether autism is a medical condition for the moment (although I expect and welcome comments on this):

With all due respect, here Ms. Wallace made a common mistake in equating understanding causation with progress towards therapies. Ms. Wallace seems to have bought into the assumption that if we know the causes, we will automatically know treatments. Well, yes and no. Yes, understanding causation may help in many cases. At the same time, in many cases it likely will not.

Take, for example, the idea that autism is vaccine injury. The alternative medical community already assumes autism is a vaccine injury. They already claim to be treating autism as vaccine injury. Do they have a “cure”? No. Do they even have any proven therapies? No. For that matter, are any of their therapies really based on treating vaccine injury, as they claim? No. As a simple example: can anyone point to a truly innovative therapy that Andrew Wakefield (father of the MMR-causes-autism theory) has developed?

Consider HBOT (Hyperbaric Oxygen Therapy). Can anyone give a clear explanation how that ties into vaccine injury? The closest “therapy” based on vaccine injury proposed so far is chelation. The removal of mercury from a body supposedly mercury poisoned from vaccines. The latest study, from their own researchers mind you, shows it is as effective as a placebo. Which is a nice way of saying: chelation doesn’t work.

I am not saying that causation research is useless. Far from it. However, it is neither necessary nor sufficient to produce the medical therapies many parents are searching for to treat their children.

I’ve gone off track from reporting the responses Ms. Wallace received to her piece. I’ve probably also sidetracked the discussion that will happen here.

Today Ms. Wallace added some comments she has received from autistics.

n the past week or so, I’ve heard from several people who said they were on the autism spectrum. They all said they enjoyed the article. What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.

I’ll end with one comment out of those tweets:

“I have Autism. But: I am a person, not a problem. I am an asset, not a subject. I’m not a lab mouse, I am human.

David Kirby: No friend to my autistic kid

27 Oct

David Kirby is certainly no friend to my autistic child.

I don’t know why I let David Kirby annoy me. It is a pretty safe bet that whenever he blogs he will write something that rubs me the wrong way. Whether it is his clear lack of science acumen or his faux fence sitting “I’m just trying to spark a national debate” ruse, he never fails to write something offensive.

Recently he responded to the very strong possibility that the number of autistic adults is much higher than previously thought with what amounts to essentially, “Autistic adults? Nope, I’ve never seen ’em. They must not exist”.

The right answer in my view would be, “We need to confirm this right now and find out who may be getting no support or the wrong support.” That’s what a friend to my kid would say. By denying the existence of autistic adults Mr. Kirby has shown himself to be about as far from a friend as I could imagine.

In his recent interview with Sharyl Attkisson Mr. Kirby noted that he didn’t see any autistics on the subway or in his neighborhood, therefore there can’t be 1 in 100 autistic adults. Therefore, according to his logic, there is an autism epidemic. Of course he says this is to support the idea that we need to take the vaccine issue seriously.

It was nonsense when he first said it and I pointed it out. I thought that having embarrassed himself on national TV, Mr. Kirby would quietly drop the idea that somehow “I know ’em when I see ’em” is either valid or respectful. I’ve watched Mr. Kirby for too long to even hope that he would apologize or do a real retraction without real pressure but I will say I was surprised to see him write a blog post basically defending his autistic-radar.

In a recent blog post Mr. Kirby has expanded his scope of not-finding autistics. It isn’t just his recent subway ride that was devoid of adult autistics, it is his entire life:

I have lived in many different cities, worked at nine different jobs, and met thousands of men and women throughout my years. I cannot recall people who showed the characteristics of high-functioning autism, though I must have met some along the way, at least in passing. But there were not 1-in-60 boys with ASD in my schools and there are not 1-in-60 men with ASD in my area. I think I would have noticed them by now.

Repeated for emphasis:

I cannot recall people who showed the characteristics of high-functioning autism

In an entire lifetime, no one who might be high-functioning autistic?

David Kirby has been around the autism community for a while now. Somehow I think he must have seen some adult with high functioning autism. Are we to believe that no autistic adults attend the DAN conferences, the Autism One conferences, or the myriad other alternative medicine conferences that hold David Kirby as a hero? Are we to believe that no autistic adult parents of autistic children attend these conferences?

One specific question that popped into my mind: Has Mr. Kirby never been to a conference with Teresa Binstock? Ms. Binstock is one of the authors of Autism: a novel form of mercury poisoning (a faux-journal paper in Medical Hypotheses). Ms. Binstock is also reported to be an autistic adult (Asperger syndrome). Mr. Kirby has never met her? Possible, but unlikely.

According to his interview Mr. Kirby’s criteria for Asperger syndrome are:

“restrictive, repetitive and stereotypical patterns”

“interests and behaviors that are abnormal”

“Repetive motor mannerisms such as hand or finger flapping”

“Significant impairment in social, occupational and other important fuctions”

I guess as Mr. Kirby was passing people on the subway platform he had some test of social functions? He can tell what your interests are (and somehow label them abnormal) just by looking at you?

For Mr. Kirby’s edification, here are the DSM-IV criteria:

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.”

Here’s another hint: if diagnosing ASD’s was as simple as a checklist there wouldn’t be tests like the ADOS.

Mr. Kirby continues the old ruse that autistics are so obvious that one couldn’t possibly miss them, even in passing. Contrary to Mr. Kirby’s assertion, it is possible that he could have missed some autsitics in his subway travels. When the autism rate for children in Cambridgeshire was recently reported, the researchers noted that a large fraction (1/5 to 1/3) of autistic students were undiagnosed. Yes, even educational professionals who spend every day with a kid can miss the fact that the child has an ASD.

In his blog post Mr. Kirby bolsters his argument with a quote from Anne Dachel, probably best known to readers here as an blogger at the Age of Autism. Ms. Dachel states:

“an insult to thousands of teachers and counselors and doctors – who apparently ‘stupidly’ ignored these kids in the past. If they were always here, but we just called them something else, then what did we do with them?”

I am always saddened when an educator like Ms. Dachel confuses intelligence with knowledge. Intelligence (smart/stupid) is not the same thing as knowledge (or ignorance). When previous generations didn’t diagnose a child with an ASD there were many reasons. One big reason–the diagnostic criteria were different then. That is and example of ignorance. I feel silly pointing this out to an educator, but in 1980 they didn’t know (in fact couldn’t know) that the diagnostic criteria would be different in 2000. How many times have we heard, “autism wasn’t covered in medical school back then”? This is used to “show” that autism was rare then. Well, if they didn’t get the training, they were very likely ignorant of the differences between autism and other disabilities. They were certainly unlikely to know the diagnositic criteria for Asperger syndrome, since it didn’t exist at the time.

To answer Ms. Dachel’s question, “what did we do with them”: many autistics services were served under the label of mental retardation. This isn’t even speculation. In a recent study King and Bearman showed that a large number of autistics in California were diagnosed as having mental retardation before 1987. As the criteria changed and awareness grew, these individuals (both children and adults) were also given autism diagnoses. They checked the actual records of actual people and documented it.

To further answer Ms. Dachel’s question, “what did we do with them”: many of “them” were unserved–just like today. Remember that study in Cambridgeshire we just mentioned?

Back to David Kirby’s blog post: he shows us that he is truly “concerned”:

In my opinion, to shrug and treat this story as if things have probably always been this way is, frankly, wishful thinking and unsettling.

It is Mr. Kirby’s response that is unsettling. Heck, it is beyond unsettling. Way beyond.

I think his response the NHS report (that there are 1 in 100 autistic adults) by claiming that since he can’t see “them”, “they” don’t exist is beyond wishful thinking and unsettling. Mr. Kirby acts as though the study doesn’t exist. Worse, he acts as though it shouldn’t exist.

I usually try to avoid speculating on motivations. But, I can’t help myself with these latest comments by Mr. Kirby. Why did he feel the need to downplay the existence of adult autistics in high numbers? The report that there is a high number of unidentified autistic adults is a direct threat the the idea that vaccines caused an epidemic of autism. How does that play to someone who has made a career out of “Evidence of Harm. Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

Consider, if you will, what happened when people like Mr. Kirby pushed the idea of an epidemic of vaccine-induced autism. When the ideas came forward that the MMR vaccine or the vaccine preservative thimerosal could be causing autism, the scientific community took it seriously and responded with multiple studies looking for better evidence. But now that there is evidence of a large contingent of adult autistics, Mr. Kirby joins the denialists and defends the old-guard thinking. Ironic, that.

It has always been a reasonable assumption that there is a large contingent of unidentified autistic adults. The active denial of this possibility has long bothered me. The denial in response to the UK survey of autistic adults is just beyond the pale.

Mr. Kirby is just no friend to my kid. My kid needs advocates who will fight to make a better world for autistics. How can we do that if we deny their existence? How can we prepare for the kids of today to become adults if we don’t start supporting autistic adults now?

Gentle autistic man murdered

22 Oct

If someone says, “there’s a murder in the news and an autistic is involved”, what is the image that comes to mind for most people?

This story from the Sacramento (California) Bee: Slain student was “gentle, sometimes a target,” dad says..

There are some autistics who are non aggressive to the point of being unable to defend themselves. It sounds like Scott Gregory Hawkins might fall into that category. He was beaten to death with a baseball bat by his roommate.

“I would say that he was just very gentle, sweet, unassuming, kind of sometimes a little goofy, and he was kind of a nerdy kid who really loved his studies,” his father said.

Scott loved history and wanted to be an educator.

Sharyl Attkisson interviews David Kirby…and oh is it bad

8 Oct

Have a look for yourself:

http://cnettv.cnet.com/av/video/cbsnews/atlantis2/player-dest.swf
Watch CBS News Videos Online

David Kirby, interviewed by Sharyl Attkisson. Talk about faux-news. For those luckily unfamiliar with Ms. Attkisson, here are some of the pieces done on this blog about her. Ms. Attkisson has a history of interviewing other members of the press and not being critical at all of their unsupported claims. She did this with Bernadine Healy, who made some unfounded claims about the IOM. When a study came out disproving a study by Maddy Hornig on mice and thimerosal that is, Ms. Attkisson blogged the Thoughtful House (Andrew Wakefield) press release on the subject. There’s more, but that gives you a taste of her history.

Today she interviewed David Kirby, author of “Evidence of Harm” and Huffington Post blogger.

To start, David Kirby apparantly has rewritten his book (yes, that is sarcasm). It is titled, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

But according to the interview, his book isn’t primarily about mercury in vaccines. Instead it is all about “increasing environmental exposures, toxins in children throughout the 1990’s and into the early 2000’s from both mercury background mercury environmental mercury which is on the increase and also mercury and other heavy metals and toxic metals that are included in vaccines that we give our children.”

Notice how thimersosal (mercury in vaccines) is downplayed compared to environmental mercury. That’s called revisionist history. Take a look at the back cover from the book (click to enlarge):

Back Cover from David Kirby's Evidence of Harm

Back Cover from David Kirby's Evidence of Harm

A commenter on this blog called the recent National Children’s Health Survey to be the worst sort of prevalence study. It can get much worse. For example–according to David Kirby, when he went through the subway he didn’t see anyone obviously autistic. Yes, David Kirby, epidemiologist and diagnostician has found a dramatically low prevalence amongst the New York subway riders.

David Kirby reminds us all that Asperger’s syndrome is a disability. Mr. Kirby, go back and tell that to Lenny Schafer, the “commenter of the week” on your blog, the Age of Autism.

If someone made a comment on this blog like Mr. Shafer did he would be booed off the stage. Here’s an excerpt:

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

Your blog gave him a free T-shirt. Don’t lecture us about disability.

Dr. Thomas Insel, director of the National Institutes of Mental Health and chair of the Interagency Autism Coordinating Committee declined to be interviewed by Ms. Attkisson.

A sincere “good job” goes out to Dr. Insel. After the way Ms. Attkisson showed a clear bias in doing her story on Dr. Offit, I can completely understand Dr. Insel declining the interview.

The second half of the interview discusses Mr. Kirby’s new book, the use of antibiotics on large farms.

No, seriously, they moved from Autism to animal farms.

Way to plug David Kirby’s new book, Sharyl!

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